Porter Lyons received an incredible, completely unexpected gift over the holidays.
The 18-year-old from Garrettsville started the new year with a new heart.
Just one week after suddenly becoming deathly ill on Christmas Eve, the seemingly healthy James A. Garfield High School senior underwent a heart transplant at the Cleveland Clinic.
“I’m pretty excited to get back to the normal routine of things — except for with a new heart inside me,” he said this week from his hospital bed at the Cleveland Clinic.
Though he previously didn’t have any obvious signs that his heart was failing, Porter and his family were already all too familiar with heart transplants.
His father, Doug, went through the same life-saving procedure at the Cleveland Clinic 24 years ago. At the time, doctors blamed the heart failure on a viral infection.
“I've been more confident throughout this more than anything just because of what my dad has been through,” Porter said. “He's been so successful.”
The family's heart problems started in 1986, when Doug, then 22, complained of fatigue, shortness of breath and night sweats. His future wife, Karen, encouraged him to go to a Canton hospital to get checked.
Doctors determined he was suffering from an inflammation of his heart muscle that left it unable to pump adequately.
He spent the next year in and out of the Cleveland Clinic as his heart grew weaker. In September 1987, he was admitted and told he couldn’t leave until he had a new heart.
He spent 31 days attached to a pump that kept his blood circulating as he passed the time watching the seconds tick by on a clock. Finally, Karen got to share the news they had been desperately waiting to hear: “You have a new heart coming.”
On Nov. 12, 1987, he received a stranger’s heart that continues to beat inside him today.
Family history
During the next two decades, the couple built their life together and started a jam company, Lyons Market, in Garrettsville. They faced plenty of serious health obstacles along the way.
On Valentine’s Day 1997, Doug underwent a kidney transplant at the Cleveland Clinic after a kidney disease unrelated to his heart problems forced him to be on dialysis for eight months. The kidney was donated by a family friend.
Five years later, Karen was diagnosed with breast cancer, only to find out during her treatment that she was five months pregnant with their fourth child. Harper, now 9, was born premature but otherwise perfectly healthy.
Throughout his life, the second of their four children, Porter, has been healthy and “overly active,” as his father describes him.
Porter has maintained straight A's since seventh grade and is president of his school’s National Honor Society.
The avid Boy Scout achieved the prestigious Eagle Scout rank when he was only 13. Since then, he participated in a service project tearing down fences in rural Wyoming and led a team of Boy Scouts on a high adventure trip through a remote location in Minnesota.
Last summer, he met his girlfriend, Abby Stoffer, 16, of Canton, while the two studied Chinese together during a month-long language program at Kent State University.
Everything seemed fine on Christmas Eve when the couple talked on the phone.
Porter had been fighting what seemed to be a common cold. He’d also been feeling lethargic and tired. Previous blood tests, however, ruled out any problems.
But when he went downstairs to be with his family that evening, his heart started racing. He gasped and struggled to catch his breath.
His father checked Porter’s pulse and discovered it was twice the normal rate. An electrocardiogram subsequently performed by Garrettsville Fire Department paramedics showed his heart was beating abnormally.
Karen had seen those symptoms before. She’d heard the same grim test results 25 years ago, when her husband was told he’d need a heart transplant.
“Oh my gosh, no,” she thought. “It can’t be that.”
Failing heart
She dismissed her fears, figuring her son had a respiratory infection or pneumonia.
But an emergency medicine doctor at Robinson Memorial Hospital in Ravenna quickly determined Porter’s silently weakening heart was the cause of his symptoms.
His mother rode with him on a medical helicopter to the Cleveland Clinic early Christmas morning. She gazed out the window, wondering how many families in the houses below were being awakened by excited children.
At the Cleveland Clinic, the cardiologists tried medications and a pump to see whether his heart could recover.
By the next day, he needed a device placed in his heart to help push blood through his aorta. Another machine served as an artificial heart and lungs to add oxygen to his blood.
Porter’s heart was weak and extremely enlarged — signs that he likely had a long-term, inherited cardiac problem, not a viral infection that would improve with time, said Dr. Nicholas Smedira, surgical director of the Cleveland Clinic’s heart transplant program.
Porter refused to let fear keep him from his goal: survival.
“OK, whatever,” he said. “Just get me better.”
On Dec. 28, Porter was listed on the United Network for Organ Sharing’s national waiting list as an “1A status,” reserved for the sickest patients.
The group uses a national database to match patients based on status, blood type, size and age when a potential donor organ becomes available, said Kris Ludrosky, the Cleveland Clinic’s heart transplant coordinator.
Two days later, Doug was silently praying in Porter’s darkened room when Ludrosky appeared and excitedly motioned for him to step into the hall.
“We've accepted a heart for Porter.”
“It's one of the most beautiful things you can ever hear,” his father said.
His parents agreed to let Porter’s girlfriend give him the good news — just as Karen had told Doug about his new heart 24 years ago.
“They found a heart for you,” she announced as his family gathered around him.
“Really?” he asked.
“Yeah,” she replied.
“It’s mine? Nobody else’s?”
“Yeah,” she assured him.
“Awesome!”
Successful operation
The fact that Porter’s blood type is AB worked in his favor, Smedira said. Patients with AB blood can receive hearts donated from any blood type.
While one team from the Cleveland Clinic traveled to the donor hospital to inspect the heart and then ultimately remove it, another took Porter into the operating room, opened his chest and prepared him to get his new organ.
The heart arrived around 4:15 a.m. New Year’s Eve, packed with preservation solution inside a plain white cooler.
Within two hours, Porter’s new heart was beating inside him.
“It worked great,” Smedira said. “It just started right up.”
As he continues his recovery in the Cleveland Clinic, Porter is learning how to manage the anti-rejection medications he must take religiously the rest of his life to prevent his immune system from attacking his new heart.
“It’s going to be a lot easier for him, because he’s got a great tutor, which is his dad,” Smedira said.
The teen will undergo regular biopsies to watch for signs of rejection, which typically can be addressed by modifying medication, Smedira said. The Cleveland Clinic’s survival rates for heart transplant patients rank among the nation’s highest, with 92 percent or more surviving one year or longer.
Test results still are pending to confirm the suspicion that Porter’s heart failure was caused by an inherited condition. In the meantime, his siblings are undergoing cardiac testing to make sure they aren’t silently suffering from the same problem.
Porter isn’t ready to talk about the overwhelming emotions that go along with having the gift of another human’s heart beating inside him.
“I just want everybody to be relaxed and happy,” he said.
Eventually, he’d like to contact the donor’s family and, if possible, learn more about the person who gave him life in death and share his gratitude.
Recipients aren’t told the name, age, location, gender or anything about their donor because the process is strictly confidential, Ludrosky said. But patients can send an anonymous letter to the donor family through Lifebanc, the nonprofit organ and tissue recovery organization for Northeast Ohio. It’s then up to the donor family to decide whether to respond.
For now, Porter is focusing on getting stronger and returning to school and his normal teenage life. He still plans to pursue his goal of studying international law next fall at an elite school.
“I’m really excited to see him blossom,” his father said. “He’s an amazing kid. He’s going to do great things. He already has done great things.”
Cheryl Powell can be reached at 330-996-3902 or chpowell@thebeaconjournal.com. Follow Powell on Twitter at twitter.com/abjcherylpowell
